Autism in motion

Talking about the way we move and our sensory experiences


An online discussion in an autism group the other day got me looking up information on proprioception and motion in autistic folks.
I looked at several studies and was disturbed by a series of reports which discussed the differences in the way people move. Comparison was done on limited numbers of young autistic adults and children and a similar group of neurologically normal/average (neurotypical or NT) adults and children. It has been discovered that the autistic ability to adjust oneself to one’s surroundings (proprioception) seems not to rely on visual input, but other senses are used more strongly instead.

It was suggested that this finding could be used to correct the way autistic people carry themselves and how we move.

My own autisistic neurology has been tested to be 25th percentile visual processing performance, and 35th audio processing performance. My NEUROLOGY is set up differently enough that I do not function well using vision and hearing in my everyday life. I must rely more on still images, written words, and the sense of touch (smell and taste too) to get understanding of my world and to make my way. The idea of training me to use my vision to have better proprioception is ridiculous.

This goes back to the many studies that show us some little fact about a certain group of autistics studied and the conclusion that because we do things a certain way, now we know that, we can correct it.

Take it a step farther for illustration : because we know Terry is in a wheelchair and doesn’t walk, we can make Terry walk by teaching him/her to use their legs. or, taking it even to more extremes,but referring to another neurological condition (also one that appears in a high percentage of the autistic population) knowing when somebody is epileptic, learning how the seizure occurs, we can teach epileptic folks not to have seizures. Wrong conclusions.

Wrong, too, to study small groups of people, 23 in one study I read and 100 in another, and draw the conclusion that ALL of us are the same in our use of vision or any other sense.

So many so- called studies are so absolutely blind to common sense.
Studies still try to lump our different neurologies into a one- size -fits- all, “everybody all together with the same signs and struggles” with lots of assumptions about function (If a few are like this, all must be like this).
It is true that many autistic people, probably the majority of us, struggle with proprioception.
It is also true that autistics can be outstanding athletes and performers of physical feats both small and large motor oriented.

Along these lines of proprioception and motion, I found discussions and studies about autism and the need for proprioceptive input.
When we “stim” we are seeking feedback from sensory stimulus.

Swaying, rocking, spinning, flapping, slapping, stomping, throwing oneself against a wall, or the floor, biting or squeezing oneself, scratching, pinching, burniing, cutting, jumping,walking, running, etc are all seeking sensory input.

I spent a lot of my childhood doing many to most of these things to myself at one time or another. I had another of those “aha” moments recently, while thinking about this.


As a young teen, I walked everywhere, all over our town, both daytime to and from the school,( about a mile) the downtown shopping district (about 3/4 of a mile away) the library (about a mile). Then when homework and evening dinner and dishes were done and the rest of the family sat down to watch television, I left home and walked and walked and walked.
I remember walking to the far side of town and thinking I would walk as far as one street went. I ended up far out in the corn fields, barns, and unlit spaces of rural country. I walked back home, too.

I have realized how important this walking motion had been to my ability to survive my daytime life.
I was stressed all day at school, came home to even more stress, and in summer vacations was most stressed of all because even the stressful school situations were less distressing than my home life and the situation I grew up in.
My walking helped relieve the distress, tension, stress, anxiety, and gave me focus, gave me plenty of proprioceptive input in seeing new surroundings as I walked.

Feeling the ground beneath my feet, feeling my body in motion, walking over various terrains and making constant adjustments to that and allowing for avoiding traffic, avoiding other people, thinking about where to cross at intersections and how to avoid giant mud puddles, barking dogs, etc, the scents, the sounds in each place I passed through; all provided loads of proprioceptive experiences without my having to worry about the troubles “back home”.

My thoughts turned to the caged “big cats” and other animals in any zoo situation, dogs and cats kept as pets, and the horses I have worked with all these years until my recent retirement.
In cases where natural activities are restricted, these animals develop quirks and ticks of behavior. They rock from side to side, shift their feet in a specific pattern, changing balance from one foot to the other. They self mutilate, They kick the walls or chew them, or do all of the above. They may eat their own feces, urinate inappropriately, have unnatural rituals or participate in patterns of destruction of their surroundings. Check with any zoo keeper, stable hand, or kennel worker, check with pet owners!
Confinement under unnatural or stressful situations needs to provide an outlet. Those that don’t get this natural outlet will find other ways of expressing their needs.

How much of that can we apply to people confined to their homes, to support /care institutions, to hospitals and nursing homes, to situations such as schools and offices or day care?


All of it!!!

Highly intelligent in our own human way, we probably need a lot more support in those confined situations.

Humans are indeed animals, and our natural state is to be in motion.

If we provide plenty of opportunity for more natural proprioceptive input for animals in zoos and horses in stables and confined to small paddocks, or to pet dogs in apartments or houses , many of the unnatural behaviors are limited in expression or fail to appear, disappear in those with established habits.

How can we provide opportunity to move naturally for those who are restricted to rooms, houses, institutions, or other unnatural surroundings, especially those of us in “captive” situations?
Think of children at home, think of children at school, think of all those adults in any situation where their actions are constantly controlled by others.

Think of ways we might be able to help so many who self injure, have unwanted habits of seeking proprioceptive stimulation in unhealthy ways.

What can be done to help provide healthy activity instead?

There is no way to express how strong a need there is for awareness of this principle in the autistic/autism communities and classrooms, homes and institutions of today.

I read so many complaints and distressed queries from staff and family members where somebody is hurting themselves, and what do we do?

think about the multiple ways to provide proprioceptive input that might be available and pour it on!

More about ways to provide proprioceptive input soon.

Autism and energy



Autistic exhaustion : why life is harder for us.

First, let me say this is not some sort of one upsmanship social game, ” my life is harder than yours, poor me!”
I am not looking for sympathy, empathy, etc, I simply want to explain about the amount of effort and energy it takes me or most any other autistic person to do “everyday life” in the mainstream of society.

We ( human beings) all have struggles, I know, and circumstances in life can be very hard.
Consider that what is effortless and natural, maybe even subliminally understood has to be derived for most autistic people through conscious effort to focus, sort information, categorize it, decide what response is required and to call upon memory and training to elicit the “proper” response.

None of it is “automatic” or intuitive, but for many autistic folk, must be constantly viewed, heard, felt, sorted and processed before we can perform.

It requires a great deal of purposeful behavior, directed in consciously thought of and deliberately performed ways to do what most neurotypical people do from some natural store of saved information and programmed, automatically accessible responses or actions.

Many of us (autistic persons) do not have intuitive understanding about any activity or situation.
That means we have to work hard to understand and come up with the correct response.
Meantime, sensory input is not automatically sorted into background noises, background activities, which is important at the moment and which can be safely shut down (most of us can’t shut input down) and ignored. So we expend mental and emotional energy trying to sort information we recieve from all our senses all the time.

Almost every act, every word , in any social situation requires deep focus and concentration, strict control of responses to self edit and direct words and actions, and conscious attention to not only the person or persons involved in the interaction, but also to keep from being overwhelmed by the other things going on around us, by the emotional responses or anxiety to do well and not “mess up” the interactions, sort visual, audio and other sensory input and grasp what is needed to perform the interaction at the same time as trying to keep all the other sensory input from overwhelming or intruding.

Most “normal” “average” or “neurotypical brains” do this stuff automatically, but for many autistic folk each part of any activity or interaction must be consciously sorted and directed, and in so many cases, this is done much more slowly and deliberately since any response is not automatic.

The major underlying automatic response for me is to be afraid… afraid of what will happen if I mess this up, afraid of making somebody angry or annoying them, afraid of being mocked or bullied or chastised, afraid they won’t understand what I am saying or that I won’t be believed. Coping with this feeling of fearful anxiety takes energy too.

I have a terrible time trying to sort out what is being said, what is actually meant, what is expected of me, and what I should do to respond in every situation. Depending on our sensory processing, the problems other autistic folks have in interacting may be very different from my own.

Unless the setting is exactly the same every time, each experience is new and I have to decide carefully on my responses or dig through my emotional and mental response resources to draw from scripts saved in my head. This is conscious, and not automatic. I can “lock up” or “freeze” when attempting to find the correct response, especially if I feel pressured to respond quickly. Worrying about whether this “freeze” might happen adds to stress and distress of the performance anxiety which is always present in social interactions. Stress drains energy and emotional resources too!

Practicing scripts is useful, and has proved helpful over my long life, but they are only useful if I can find them in my mental files and recognize the opportunity to use them. I can get the scripts very wrong, and can misapply them, leaving aggravation or bewilderment, dismissal and rejection in my wake. So very frustrating.

Communication struggles are one of the core struggles of autism.

These struggles take place all around me every day, even at home.
It is much more difficult to succeed in interactions in unfamiliar places, places with loads of sensory input (lights, sounds, activities of people, machines, traffic, or other unfamiliar surroundings) and it takes a lot of emotional and mental energy to perform under stressful and distressing (to me) circumstances. Things many neurotypical people take for granted must be dealt with as individual actions needing sorted and active responses considered, sought and sorted from previous experiences and applied consciously rather than as simple perception and responses typical of “normal” folks.

No wonder I am exhausted after a day out, whether planned activities for fun, or things I must do as part of living life and the things life brings to us.

Emotional and mental resources give in to overwhelm. Many times after doing things in the “outside world” I come home and almost immediately require a nap!

If you are autistic, you probably understand what I am trying to convey,

If you are not autistic, I hope I have helped you understand why some things that seem so easy and simple for you are actually very difficult for many autistic persons.
I hope you will take this into account when planning activities, outings, or any other situation where you may include us in your agenda. I ask that you will help us find a way to escape the activity if we become overwhelmed, and that you will forgive us and not be offended if we don’t fully participate, leave early, or decline an invitation.

Please understand: Even the seemingly simplest activity can be very stressful and difficult for those with autistic neurology.

Autism and Sensory Trauma

Sensory trauma explained


I don’t often post links to other pages, but I do go back to “learn from autistics” repeatedly, and I do recommend it to others who are seeking information about the experience of autism. Useful for insights about how we as autistics experience our world.

Each one of us is different, our challenges and our experiences are all different, so sometimes I do not identify with some of the people in the interview section of the pages.

This particular series, however, was so well explained and so completely descriptive of some of my own trauma due to sensory issues, that I am including it here, in hope that somebody else may benefit.

Spouses, parents, siblings, co workers, caretakers, friends, and others who are not autistic may find this website useful for understanding the “autistic experience”. Who better to explain what our world is like, than those who have lived experience???


https://www.learnfromautistics.com/autism-interview-171-part-1-emma-reardon-on-sensory-challenges-and-sensory-trauma/


In recalling some of my most traumatic sensory experience “the stairs” loom as one of my most consistent challenges.

Through second grade, the school I attended was all on one level, no stairs. Beginning third grade that changed, as our family had moved to a new city. The grade school there was on 3 levels with a huge granite staircase as the dominant architectural feature.

The stair steps were low and wide and the stair well had railings only on each side and an open inside wall from railing height and above. The echo was incredible, the height and depth of the staircase was terrifying in dimension.

The other children ran up and down the steps, pushing, shoving, some dodging in and out of the main stream. I clung to a railing trembling and carefully placing each foot, and in desperate fear of falling.

This happened going up and down multiple times a day, for recess, lunch, “gym class” etc. Those stairs were the bane of my existence and I always got in trouble for being the last in my seat, last in line, etc. I had developed the seemingly reasonable technique of waiting until the other children had gone ahead before I attempted my terrifying ascents and descents.

In every school thereafter, there was the challenge of “the stairs”. Up levels and down several times a day.

Most class changes had us hustling to try to get to our next classroom before the “bell”. I was almost always late.

In addition to this, in middle school I also contended with aggression of others, one boy in particular finding it funny to run into me in thestairs or the hallway and to knock my huge pile of books out of my arms and send them flying in a storm of paper, pencils, and leaving me bruised.

I made sure nobody was near me on those stairs, not a soul on any staircase before I attempted to navigate them.

No teacher ever scolded him, I learned to wait standing in the hallway against the wall until he went into the classroom. ( he was always one of the last in, because he stalked me, waiting for an opportunity to attack).

I was always in trouble for being late after the bell.

I was constantly asked why I was in the hallway after others had long gone.

It was simply safer to me to get scolded by an adult, than it was to risk my life and risk injury every day on those stairs with the stampeding herds. I truly felt I was in that sort of danger every time I encountered stairs.

Can you imagine living in that sort of constant fear when approaching a seemingly simple every day activity?

There are loads of other memories I have about other sensory experiences, but the trauma of stairs is still with me.

If you are autistic, I bet you can think of some sensory traumas which have been with you all your life, too.

“fixing” Autism

“Now you know, so you can change that”


I encountered this in one form or another all my life.

I was wrong, I was bad, I was a problem.

By being told how I was wrong, bad, stupid, a problem, or otherwise behaving badly, I was supposed to understand and change my ways. Often this was not specific, but things like “you know what you have done”, “think about it” or “shape up”,
It was assumed at all times that I was “doing it” on purpose, no matter what behavior or lack of insight or comprehension of any given situation or actions was involved.

I see this constantly on forums, in discussions, in ideas about “autism training” “behavior therapy” etc.
The concept seems to be rooted in the idea that all I ( the autistic subject) need is to be enlightened or told and then I can willfully and simply change their behavior.
( In this is the idea that the autistic person will want to simply change!)

“what can I do to make my child like “this thing” ” “do this thing” “behave this way” ?

” What can I do to make my autistic partner more responsive to me” ?

“I love my mate but they are so socially inept, how can I help them”?
( meaning how do I get them to change to somebody who is not like that)

“I want to help my mate be a better partner, he or she ( description about all the things the partner does that are not what the complaining mate wants)”
“I care so deeply but if my partner does not do (this) I will leave them” ( its not a partnership where we work together, it is either my way or the highway)

I see this as maladjustment of the person asking the question in each of these instances. It is not convenient or easy or comfortable to change oneself, so it is easier to blame problems on the other person. The autistic child or adult carries a double whammy because, well, autism. Relationships always require the work of all the individuals involved to be successful, in shared problem solving, especially.
Subjects under a dictatorship are likely to revolt eventually.


In many instances there is a great deal that could be done if the complaining person, parent, partner, spouse, classmate, friend, etc. Would take a look inside themselves and see if there are other ways they could choose to behave or react in cases where they want the autistic person to change or “do better”.

I was subjected to rages and physical abuse, emotional abuse, manipulation, intimidation, and more, to try to “fix” my autism and make me into an acceptable form of person to my parents, my siblings, my friends, my spouse and others.
I did not do what they wanted me to, did not react or behave as they thought I “should”. My childhood and young adult life was a misery.

If your child does not do something you want them to, how do you change your actions, reactions, behavior, environment, words, schedules, expectations, to adjust to this circumstance?

If your autistic partner, friend, spouse, etc. Is doing something that you do not like, do you continue to punish, abuse, berate, criticize, harass, belittle, intimidate, scold, and shame in expectation that they will change ?

Do you just do that over and over, maybe more loudly or harshly or with more anger?

I suggest that the person who has the complaint needs to think of new ways to approach any problem, so that it is not simply up to the autistic person to change.

Instead of expecting the leopard to change his spots, try changing your approach to the leopard.

Some things are not possible due to invisible workings of our neurology. Some things may be negotiable or navigable with support and encouragement.

Constant criticism, “fixing my problem” by making me miserable because everything is all my fault for not doing better, fixes nothing at all.

Is it any wonder so many autistic people avoid contact with others ? Avoidant behavior may be considered a personality disorder, but it makes perfect sense to those of us who have lived our lives under constant demands we are frequently not equipped to respond to in the expected ways. After so many repeated social failures is it not reasonable to find relief by withdrawal?



Grief and Autism

Defining grief and discussing feelings of loss and sadness surrounding Autism

This is dangerous ground. Issues surrounding Autism are sometimes very political and raise great emotional reactions. Ideas about grief are among the most controversial, discussed, ranted over, rage-raising and distressing issues on many autistic forums and blogs today. I am about to try to sort some of the controversy, anger, shaming, blaming, and distress. Instead I might inadvertently add to it, who knows?

I spent hours reading definitions of grief preparatory to writing this.
Grief can be explained as a normal or natural reaction to loss, deep sorrow in reaction to change of any sort, the usual being over loss of a relationship due to death. There are also aspects of grief in loss of expected outcomes or change of expectations or plans .

Grief is not simply feelings of loss, but also a ground for conflicting feelings of guilt, anger,sadness, relief, or release. We can feel sorrow over the loss of a parent and still feel relief over their release from suffering, from the difficult behavior or painful relationship, and feel guilt for feeling the accompanying sense of freedom. All of that is part of grief, and there is often much more.

In natural cycles of grief there can be stages of denial, anger, bargaining, depression and sadness, and acceptance. These can happen in stages, and can be repeated over and over in any order, sometimes simultaneously, other times remaining in one stage for long periods of time.

Many people may need support and counseling or therapy to help with grief. It is not uncommon for adaptation to be incomplete or adjustments to be unhealthy in our search for consolation , solace, and peace over our place in the midst of our losses.

The thing that brought grief to my attention was the third reading of Tony Attwood’s excellent book on autism. “The Complete Guide to Asperger’s Syndrome.”

I read it through the first time when I suspected my autism but was not sure. I thought much of it was written only about children and did not see how much of it applied to me. Then I read it again and recognized so many traits and experiences of my own from my childhood (looking at it and comparing it to my younger self). The entire book read from the aspects of my own childhood was filled with “aha” moments.
I was amazed and so interested… it explained almost everything about my early life. This was it!

The third time I read the book, something very strange happened. As I read those descriptions of childhood struggles I had the urge to cry uncontrollably. I felt sadness and loss and immeasurable helplessness and confusion. I was re-living my childhood emotions. I felt the feelings I had felt in all of those impossible situations from my childhood, the guilt, the anger, the sorrow, overwhelming sorrow and sadness all wrapped together in one experience, each situation the author described bringing forth a flow of memories of similar situations from my childhood, adolescence, and teen years.
The most predominant of these was the deep sorrow I had for myself and my struggles.
I experienced this feeling for most of my life. Feeling nobody understood, nobody cared, I was lost and helpless, feeling I was the cause of everybody else’s troubles. I remember being told over and over to stop feeling sorry for myself. I remember wailing ” I don’t know how” .

I can remember so many tears and so much distress. I remember begging for therapy, a counselor, for somebody to help, and being told repeatedly that “there is nothing wrong with you”.
I just needed to shape up, to get with the program, to shake it off, pull myself together and TRY..to do right, to be good, and to stop being selfish and bad. I never understood how I was supposed to do these things, but I was to do them by myself by willpower and strength of character. The feeling of futility was immense.

OK, back to grief. I believe I was trapped in grief and despair. I knew I needed help and comfort and that I was not ever ever going to get. I had a need for understanding and compassion for the struggles nobody seemed to understand, and took for deliberate willfulness and acts of evil. I needed explanations, insights, support and directions, I needed details of almost everything explained in depth . I knew I was not going to get them in my home situation.
I came to the stage of acceptance eventually, but the underlying sadness was there throughout most of my childhood and young adulthood. I spent my early day to day life not only in fear and dread of any interaction or mistake I might make, but also in grieving for the things I was pretty sure others had somehow obtained but that were forever out of reach for me.

Grief for loss of loved ones is called bereavement. It is a reaction to losing through death, divorce, separation, life changing disability or other circumstances. I have always processed this sort of grief more easily because the “why” factor is usually evident. The loved one died, had health changes, was no longer in love , moved far away, all concrete facts that don’t have that “why” factor.

Now we come to an opinion that is not popular with many autism groups. There is a huge backlash against parents of autistic offspring who lament online that their children are suffering and wish that they were not autistic.
I find the anger of some autistic people may be misplaced because the distress the parents are showing is at their own helplessness to help their struggling children, some of whom are very heavily afflicted with many of the worst features of autism.
I think it is natural grief that is showing, however poorly worded in forums or blogs. The parents are truly grieving because they see all sorts of things that they have been helpless to prevent and to aid.
There is a loss of expectations for a normal childhood and adulthood, a loss of dreams for a bright future, a loss of the idea of “what it was supposed to be”.
I understand the angry autistics’ reaction to the spoken wishes of so many parents saying they wish the child had not been born, that they wish the child was not autistic, etc.
In many cases such children are killed by their parents. In many cases children are abused by their parents.
In times of the past and today, many wish for elimination of pregnancy of a potentially
” damaged ” child , society of today deeming it is OK to select which pregnancy can be terminated , the demand is there for tests for autism as there is for down’s syndrome and other genetic conditions. To be an autistic child and hear that you are unwanted is probably a very common state. I heard it too. I understand the reaction against such statements. I understand the reaction against being told we are unwanted.
I understand the pain it causes in our own autistic hearts and I suggest that the anger we feel is grieving of our own over things that we have missed, have lost, have never known. I have no answers. Grief is part of the human condition and will be experienced by the vast majority of humans today. Grief has been the hardest to sort and understand of all the almost constant emotions of my life. Now with my new understanding of my own autism I am making progress toward sorting it out.
I have no answers but find it difficult to focus all of my rage on the parents in these support groups who are feeling loss of ability to help their children, who feel grief at the things they want their children to be able to experience or goals they will perhaps never attain. I don’t think it is realistic to blame the behavior of a few parents on all parents of autistic children, any more than we all recognize how unfair it is to blame ourselves for our autistic struggles, or the behavior of a few autistic people .
I may write more about grief and autism as I continue to sort and to understand. Mean time, I want to make a call for unity. Autism needs different perspectives of diverse people to continue to help us all understand the many ways we are affected, our needs, our self understanding, our struggles and our triumphs. I hope we can refrain from tearing other grieving people apart in our quest for “justice”, “fairness”, etc.
As human beings we are all in this together. Let kindness and not anger and retribution win this one.


Who am I ???

Finding your authentic self after diagnosis


There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.



I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).


I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

What happened to all the autistic children?

They grew up to be adults!


Awareness is rising about autism and most people have heard of autism. Autism is primarily thought of as a children’s issue in the eye of the general public. What happens when these kids grow up? What happened to all the children who grew up before autism was commonly diagnosed in kids? They are now autistic adults!
If the CDC is right, there are well over 4 million autistic adults in the United States alone, and most of us have never suspected we are autistic.

How do we find autistic adults today?

Autistic people are more likely to be suicidal.

Autistic people are more likely to be victims of crime.


Autistic people have a higher rate of depression and anxiety.

Autistic people account for about 10 percent of admissions for treatment in rehab centers for alcohol and drugs ( compared to 1 percent of the general population admitted) This is truly stunning when you understand that autism is believed to affect 2.2 percent of the general population.

Autism may account for up to 10 percent or more of the homeless population.

Autism may be involved in those admitted to jails and prisons although very little or no research has been done specifically on autism. Intellectual disability in general has been studied as a factor in prison populations and shown to be present in higher than normal levels among the general population.

Autistic people tend to have poorer health and to die younger. Life expectancy in some studies is as low as 38 years. Other studies say around 58.

From these statements one can see how knowledge of autism would be particularly useful to certain groups. Doctors and health care workers of all types, law enforcement professionals, social workers, can you name others?

Diagnosis of autism as an adult can change lives. Self understanding is one of the keys to finding a new life amid common social struggles. Autistic people seem to have more than our share from a statistical reporting level at the very least. I can not tell you the huge difference my understanding of my own late diagnosis has made in my mundane and every day life. I can only imagine how useful such self knowledge can be to those struggling with such difficult issues in their lives, and how useful it would be to know and understand about how autism may have been involved in so many lives of pain and hardship.
I am reading of mandatory screening for autism in new hospital admissions for suicidal behaviors. I am reading of mandatory screening in clinical situations for care of those struggling with addictions.
I am grateful that professionals in some places are using today’s understanding of autism to help recognize and diagnose autistic adults. So much more needs to be done. Please help spread the word.

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.


Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!